There is this image of an anthropologists as a detached observer, who doesn’t let his or her own ideals or visions of how society should function or ethical views of how people ought to treat each other guide her research. But sometimes it’s hard not to care. Pressing issues of social justice challenge the border between scientific disengagement and ethical activism, and “open up important possibilities for rethinking what anthropology is and does, and what contributions it can make to global activism concerning social justice “ (Merry 2005: 241).
While I was in the field, I was working, I was a researcher, and I didn’t feel personally affected by the things I was observing or hearing. I was (and still am) supper thankful that my ‘informants,’ the people I’ve had the pleasure of speaking with, didn’t treat me with kid gloves. They spoke to me quite candidly about their, or their societies, attitude toward people with disabilities or ‘the issue’ of disability and accessibility (separating ‘the issue’ from the real human struggles). But now that it’s over, the goals (for this summer), have been reached, it’s time for processing, and the emotions are starting to come out. I guess it’s undeniable that I have a disability too. Yet I’m well aware of all the privileges I’ve received in life, growing up in wealthy countries, with loving and supportive parents, accommodating schools,etc. But I know this very privileged life i’m living seems so impossible and unthinkable to many people with (or even without) similar physical limitations – and this is, I guess, my personal bias or (ulterior) motive in this research. That is why I can’t simply be a detached observer. sorry.
At the risk of sounding ‘unprofessional’ I want to share some personal reflections about the hardest parts and the most pernicious attitudes I’ve been confronted with in this research. What I keep running into is this underlying attitude that disabled people, as a group (not the ones you know personally), are an entirely different class of human beings. Rather than equal human beings – with the same desires to be included, acknowledged, and to feel like we are contributing in a meaningful way to our society – whose bodies or minds happen to function a little differently. Another thing is the idea that ‘disability is something that doesn’t concern me’ or only affects a small segment of society. ‘Why go through the trouble of making the world more “comfortable” for a few unfortunate misfits who are too blind, or too lame, or to deaf, to function in the ‘normal’ world?’ ‘Why should ‘we’ bow to ‘their’ needs?’ But why should those who can walk always be privileged over those who can’t? Why should those who can see and hear be privileged over those who can’t? It doesn’t hurt anyone to make it possible for blind people to cross the street safely, or for wheelchair users to have access to buildings too (I didn’t frequently go into such discussion during my field research, but now I guess my personally biases are coming out). Disabled people are not asking to be seen as a special group that deserves special accommodations, assistance, and privileges. We just want to be able to function as normal human beings in the world – and yes, that may involve making some adjustments to the current order of things, but again, it’s not about making ‘special accommodations’ for a few misfits, but creating a more inclusive environment for a more diverse range of people because that’s what we all are, and we all deserve equal access and chances, in my humble opinion.
Jennie Fenton began her TedX speech “inclusion, belonging, and the disability revolution” with an illustration of the caste system in India where there is a segment of society that is excluded from most profession, receives substandard wages, experiences exclusion from many public spaces and communal resources like wells “purely by virtue of their birth, whole groups of people have been segregated within their communities, at festivals, in restaurants, in schools,etc” and asks the audience to imagine if this kind of marginalization were happening in your society. Wouldn’t you be outraged? Well, she points out, it is happening in our societies, and this (or at least one of these) excluded group are people with disabilities, who, purely by virtue of the body they were born into (or developed through no fault of their own), do not have equal access to many parts of their society. And yet we turn a blind eye. or make up excuses like ‘there isn’t enough money to change this.’ or ‘the disabled people themselves prefer to stay in their homes and be lazy and let other people care for them.’
Sometimes I feel like I’m shouting this to a stone wall though. Sometimes I feel like I ought to acknowledge that, well, this is just one of the many ‘issues’ in the world. And of course, everyone thinks their cause is the most important. At Slot (the festival where I presented on this topic), there were so many different NGOs represented and different ways of changing the world that one can choose from. Sadly, it makes sense to me that “mine” (in quotation marks, because, of course, I personally feel like it should be everyone’s concern) isn’t seen as the most important or the most popular cause out there. Sometimes I feel like I don’t even care anymore either. But maybe this is a symptom of what anthropologists call ‘going native’? – when you start to adopt the attitudes or worldview of the people you are studying. in my case, the majority. I’m studying their attitudes, and sometimes I feel myself starting to adopt them, and almost agreeing with expressions like:
“Creating a secure economy is most important here. After that, you can start dealing with the comfort of the people.” – equating accessibility with comfort and ease, or even privilege, rather than an issue of equality and inclusion.
“everyone struggles in this society. The majority needs to be served/content first, before people can start to think of such first world issues as ‘minority rights” – talking about disabled people as some kind of second rung citizens who need to wait their turn patiently, to be ‘served’ and have their needs met, rather than full members who could already play an active role in building and shaping society.
“Why go through the trouble [of everyone learning sign language along with their first language, so deafness wouldn’t be a disability or disadvantage in society] for a small group of people you might never meet in your life anyway? It’s like telling everyone they have to learn Swedish. What for? Just so you can communicate with them and make them feel welcome, if you happen to meet someone who speaks Swedish here in Poland?” – reflecting the idea that disability (or at least certain disabilities) only affect a small segment of society, and the underlying assumption that ‘those’ people can remain confined to ‘their’ sort. as long as ‘their’ parents and ‘their’ teachers can speak their language, everybody else doesn’t have to bother. Its not an issue that everyone needs to concern themselves with.
And you also hear the sentiment of disability as the ‘minority card,’ the golden ticket that gives you special access and privileges and discounts [in ‘western’ societies and increasingly more so in PL as well). This sense of jealousy or suspicion toward disabled people and the idea that they don’t have to struggle as hard in life, because everyone, and society in general, spoils them and takes care of their every need, and they (disabled people) know how to wrap everyone around their little finger and get what they need or want without having to struggle for it.
…..The thing is, that such expressions make sense to me, and sometimes I also start to feel like: why do I bother? maybe this is just a ‘first world’ luxury issue, and I shouldn’t be bothering or annoying these people with it. 😦
But on the other hand, creating accessible spaces really doesn’t have to be an issue of having the right amount of money (and believe me, even when all the money and resources are there, people could, and do, still neglect it), it’s about having the right amount of motivation for it. Where there’s a will, there’s a way! I’ve also heard encouraging stories, of neighbors getting together to build a ramp for one of their neighbors who uses a wheelchair, for example. Their apartment building is designed with an elevator that stops at every other floor (someone, in the 60s I believe, thought that was a good idea, to design buildings like that. I lived in one when I was living in PL, and also happened to be living on a floor that the elevator didn’t stop directly at), even though there was just one man in the flat that needed this accommodation, and their city government wouldn’t take care of it (or it would be a process that could take years), the neighbors cared, and they built a ramp for him. Nothing fancy, and it probably doesn’t meet ADA (americans with disabilities act) requirements in terms of safety and durability, but it works, and now he can get in and out of his house. and I heard another story about a man in a wheelchair who fashioned himself a pulley system (maybe also with the help of neighbors) so he could hoist himself up the stairs, in his wheelchair, to get to his apartment room. Poles are very creative and, if they care, they’ll always come up with clever solutions and help one another. Stories like this, and the fact that one person came to my speech voluntarily, and everyone in the audience (all three of them) really cared about this issue, gives me hope.
In activist anthropology, the researcher utilizes personal convictions as a strength, rather than avoiding them as though they were a trap. It challenges the notion that the anthropologist is a detached observer who simply has an academic and impersonal curiosity about the habits, customs and believes of the ‘natives,’ rather than one who holds a shared commitment to improving their situation (Merry 2005: 242). “Part of activist anthropology involves developing the research questions and project while working with informants, allowing them to participate in the production of knowledge which will contribute to understanding the issues they face and how to resolve them.” (anthropology.net)
“The connection between anthropology, advocacy, and activism goes back at least to early 20th century American anthropology. Franz Boas challenged the scientific racism of Victorian anthropology to insist on racial equality and that cultures should be understood in their own terms. The single most famous 20th century anthropologist, Margaret Mead, also believed that anthropology should play a role in social change. “Never doubt,” she famously declared, “that a small group of committed citizens can change the world. Indeed, it is the only thing that ever has.” (Duke University)
Merry, Sally Engle. “Anthropology and Activism: Researching Human Rights across Porous Boundaries.” Political and Legal Anthropology Review 8, no. 2 (2005): 240-57.